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Posted 3/29/2010 5:05 AM (GMT 0)
Hey, all! I'm a newbie around here with a few concerns. I was "diagnosed" with SLE last month and immediately started on Meloxicam 15mg. On my follow-up appointment, I was started on Plaquenil 200mg 2x a day. After a few weeks of that, I started on 5mg of Prednisone daily. I was also given Tramadol 50mg for pain. After that follow-up visit, I started to become quite nauseated and find myself spending MUCH time in the bathroom. Upon picking up some other regular prescriptions (fluoxetine and levothyroxine), I was informed by the pharmacist that mixing Tramadol and Fluoxetine (Prozac) causes Serotonin Syndrome and I needed to find an alternative.

Firstly, I was wondering if my severe nausea is a common side effect of Plaquenil. I know a little tummy trouble is somewhat normal from the forum search I did. Is this something you just have to soldier through? Does it go away after a few weeks? Are there any suggestions on how to make this more bearable? I'm currently not able to go to work (in the process of getting my FMLA packet filled out).

Secondly, I was wondering what is commonly taken for pain with Lupus patients. I have to find an alternative to the Tramadol (which wasn't working for me anyway... even when I took 6 in 4 hours!). I know some doctors are weary about prescribing painkillers these days, so I didn't know if any of you had any ideas about which painkillers rheumatologists seem more comfortable prescribing... I don't like getting that suspicious look from the rheumy. It took convincing just to get the Tramadol. rolleyes

Thirdly, does anyone have any experience with FMLA? I know everyone is different, but I didn't know if there was a typical amount of leave time a rheumy signed off on... (i.e. no work; half-days; half-week; later days). My employer told me last week that I should consider resigning... which later I was told was a big no-no.

Sorry for the novel. I'm just frustrated, sick and fairly lost in this whole thing. I'm only 24... so I'm definitely not familiar with having to deal with all of this stuff. It's very overwhelming and kind of scary.

Any advice, comments, questions... anything would really be appreciated. I could use some friends with experience with these issues.

Thanks so much,
Holly
Posted 3/29/2010 1:06 PM (GMT 0)
Hey Holly! I am so sorry you are dealing with all of this. I read this and I am reminded so much of when I was first diagnosed and I am 22 so I can relate a lot to you! I was started on Plaqunil and a few weeks later given tramadol and then a few weeks later I was on prednisone. I will tell you I tried to be a soldier on plaq for about 4 months and I never got over my bathroom issues. I would be in the b-room about 12 times a day. So I never got used to it but with the majority of the people I talk to, they get used to it after a few weeks.

What is commonly taken for lupus patients? Well that depends on your symptoms and how you respond to each medicine. I have been on Plaquenil, Imuran, Cellcept, and Cytoxan, as far as "lupus" meds. The painkillers...In my experience most rhuemys try to treaet the symptoms of the disease rather than covering it up with pain killers. My rheumy eventually broke down after seeing NOTHING was working and gave me Darvocet which was like the tramadol and didnt do anything. I finally went to my PCP because I was suffering from migraines and gave me some hydrocodone and that has just taken the edge off the pain.

I have been using FMLA for 2 years now. Last year I used it intermitentally for Doctor Apts, Cytoxan treatments, and when I wasnt allowed around germs. Currently I am on short term disability and I am using it along with the STD(Short Term Disabilty). I am out of work for 7 weeks and depending on how my kidneys and joints are doing might be out longer but I sure hope not! I am a very social person and I miss seeing everyone. Before th STD started I was using my FMLA to work half days. So it really depends on your rhuemy and what they think you need!

For your joints I have found that epsome bath water soaks helps and heating pad/blanket helps take a little edge off. I know other people will come along with some great advice....Hope you stick around. This forum is a great source of encouragment and I have made a lot of friends here! It is one of the big things that has helped me get through this!!!
Posted 3/29/2010 1:11 PM (GMT 0)
Holly, sorry about your diagnosis. It can be scary, but once you get on the right treatments, get your pain under control, and are able to emotionally deal with the diagnosis and lifestyle changes, you'll find that this is manageable.

I didn't have nausea with plaquenil but I did experience lots of tummy issues. Since I felt so bad at the time, I figured that one more thing wasn't going to kill me, so I continued to take the plaquenil, and I'm glad I did. It really does help.

It sounds like you have a great pharmacists, and I am a big believer in using their knowledge. That said, I would be wary of a rheumy who would prescribe two drugs that together could cause a life threatening condition.

Prednisone will help your pain, but you may need a higher dose.

I can't help you with FMLA, but I will say that I'm so glad you found this forum because if can be a lifeline to those of us suffering from AI diseases. I hope you'll stick around and become part of our little family. Hopefully someone here will come along with a solution for your nausea.

Pat
Posted 4/6/2010 5:20 AM (GMT 0)
So.... after much complaining to my rheumy, he suggested that I stop taking the Plaquenil... to make sure that this is the medication giving me all the GI issues. The nurse told me that some people just can't tolerate Plaquenil. Is this correct? Does anyone know what happens in cases like mine? Is there an alternative?

Thanks!
Posted 4/6/2010 5:45 PM (GMT 0)
Hey aims, ?y rheumy & neuro have only ever given me plaquenil They gave me pain meds & have never once allowed prednisone or anything else even though ive asked & still had symptoms. _lease check out my post about my rheumy i put up today & let me know what you think. I am 22 myself so I wish you the best in diagnosis treatment you guys! *hugs* -Brittanee
Posted 4/6/2010 6:59 PM (GMT 0)
Hey Holly! In my case, I could not tolerate Plaquenil so they moved to Imuran. I had no side effects from that but didnt have any relief from any of my symptoms. So am I understanding you correctly when you say he told you to stop an didnt put you on anything else? If that is the case, I would deffiantly ask to be on something to help your lupus from getting worse and something to control your symptoms.
Posted 4/9/2010 2:54 AM (GMT 0)
Yes, he told me to stop taking it. He's pretty much an awful doctor. I took him FMLA papers to fill out... he charged me $50 to fill them out and pretty much filled it out to say that I'm perfectly capable of working at my job full-time with no exceptions. The nurse was supposed to call me days ago about the meds but never did. He obviously just wants to get rid of me and I couldn't be happier to rid myself of him. I've got an appointment with a new rheumy Tuesday. I hope this one is alot more compassionate and on top of things. The "old" rheumy tried to prescribe me Prednisone twice (again after I was already taking it... they didn't even have it on my chart!)... if that tells you anything!
Posted 4/9/2010 3:04 AM (GMT 0)
Holly,

This doctor sounds awful - he could have told you he thought you could work before charging you for doing what you *didn't* want! Were you able to stop the FMLA papers from getting turned in?

It's sad that we have to do as much "shopping" as we do to get the correct treatment that we deserve. I hope your Tues appointment goes much better and that they can devise a treatment plan to get you feeling better.

Hang in there,
Posted 4/9/2010 3:19 AM (GMT 0)
What???? $50.00 for filling out FMLA? That is CRAZY! I have had 2 rhuemys and neither of them have charged to fill those out. I am in shock. 50.00 dollars. Holy Cow. I have had 3 filled out since January and have not been charged once. (One was for interemitant leave, then one was for working half days, then the most recent was for short term disability)

I sure hope your appointment goes much better on Tuesday. I would NEVER go back to the previous doctor, especially since they are not updating what meds you have been given, who knows what else they are not doing. I hope you can get some relief from your problems!

So sorry you are having such a rough time!
Posted 4/9/2010 3:30 AM (GMT 0)
I was afraid he would do something like that, so I picked up the FMLA papers instead of just having them fax them to my work. Luckily for me, my dad knew a PCP, so I got in to see him ASAP and he filled out the FMLA papers right there in the room with me. My rheumy experience has been a complete nightmare. I thought that maybe he would prescribe me something for the nausea the Plaquenil was causing, but he just took me off of it instead. I've got my fingers crossed about the new rheumy. Luckily, my mom is helping me out with my bills, otherwise I'd be on the streets by now! My work managed to screw me out of 60 hours of pay for last month. I definitely need money... so I'm hoping I can start back part-time very soon. I don't know how understanding jobs usually are about that kind of stuff though.
Posted 4/9/2010 12:07 PM (GMT 0)
Hi
I'm from Australia. What is an FMLA & a PCP? I get very confused by the abreviations here lol.
I hope you start to feel better soon when the correct meds kick in. Good luck with the new rheumy. Here's a hug from the other side of the world ((( ))) Take care.
Posted 4/30/2010 5:07 AM (GMT 0)
Hey, all. Just thought I would update. My rheumy's nurse called me about 2-3 weeks after I had initially been taken off Plaquenil and tried to schedule an appointment to deal with those side effects ::rolls eyes:: When I told her I wasn't really interested she asked if I was seeing another rheumatologist. When I said yes... she asked if it was a replacement doc or a second opinion. I said at the very least a second opinion. The next week, I received a letter from rheumy #1 in the mail stating that he was dropping me as a patient. Geez. I really hope I never have this much difficulty with a doctor ever again. This has been a nightmare. I hope the rheumy I'm seeing on the 17th exceeds my very low expectations! Hope everyone is feeling well and having better luck with the docs than I am.
Posted 4/30/2010 12:57 PM (GMT 0)

FMLA is Family Medical Leave Act.  If your company employs more than 50 (I think it's 50) people, they have to grant you leave for your own medical issues or those of your immediate family members.

PCP is short for primary care physician.

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